Connor's life changing SDR surgery
Donation protected
Connor Daniel was born at 25 weeks and 4 days gestation weighing 1 pound 10 ounces and measured 12 inches long. He spent a heart wrenching 117 days in the NICU and celebrated his first Thanksgiving, Christmas, and New Years away from home. He had many complications associated with his premature birth, but on February 12, 2013 we were finally able to bring our miracle home to his big brothers.
Once we were home, I enrolled Connor into the early intervention program and remained diligent in all of the specialist follow up appointments. Despite a few health setbacks Connor was developing and learning like all babies do, just at a slower rate. Our family seemed to be finally getting back to normal life.
Despite all of the doctor and physical therapy appointments we were so diligent about, nothing would prepare us for the devastating news we heard on February 4, 2014. Connor was referred to a physiatrist and during that appointment we were told Connor has spastic diplegia cerebral palsy and it was undetermined whether he would ever walk. Spastic diplegia is a condition in which muscle tightness affects the lower extremities.
Matt and I were heart broken. The idea of Connor not being able to play tag in our back yard with his brothers or go on a walk through the woods exploring nature was, and still is, devastating. We realized quickly that we had to pick ourselves up and give Connor the best life possible, no matter what the cost. We began researching cerebral palsy and ways to help Connor. In our research we discovered Dr. Park at St. Louis Children’s Hospital and a procedure called Selective Dorsal Rhizotomy (SDR). Dr. Park is the pioneer of this procedure and is one of the world’s leading neurosurgeons specializing in spastic cerebral palsy. The doctor cuts the nerves in the spinal cord that cause the spasticity and although it’s not a cure, SDR is the only permanent treatment for spastic cerebral palsy.
Due to the spasticity, Connor is unable to stand or walk independently. He’s able to furniture cruise, crawl and in environments that allow, he uses a reverse kaye walker. The spasticity is to blame for Connor developing foot deformities as well as hip subluxation. Spasticity is painful and therefore Connor is on daily medication that reduces the muscle tightness.
Connor was recently accepted by Dr. Park for this life changing surgery. He believes after surgery and intensive therapy, Connor could become an independent walker. He also feels that Connor is at the perfect age to undergo this surgery and feels that doing this at a young age will minimize, if not eliminate, any future orthopedic surgeries.
This surgery will take place on March 3, 2015 in St. Louis, Missouri. We are responsible for 20% of the surgery/hospital cost in addition to travel and hotel accommodations. We will be in St. Louis for 8 days and feel that it is in Connor’s best interest to fly, especially after discharge. All money raised through this site will be used for medical and travel expenses associated with this procedure.
Please consider donating to this life changing surgery for Connor.
We know God is not finished with Connor and we are trusting in Him!
Once we were home, I enrolled Connor into the early intervention program and remained diligent in all of the specialist follow up appointments. Despite a few health setbacks Connor was developing and learning like all babies do, just at a slower rate. Our family seemed to be finally getting back to normal life.
Despite all of the doctor and physical therapy appointments we were so diligent about, nothing would prepare us for the devastating news we heard on February 4, 2014. Connor was referred to a physiatrist and during that appointment we were told Connor has spastic diplegia cerebral palsy and it was undetermined whether he would ever walk. Spastic diplegia is a condition in which muscle tightness affects the lower extremities.
Matt and I were heart broken. The idea of Connor not being able to play tag in our back yard with his brothers or go on a walk through the woods exploring nature was, and still is, devastating. We realized quickly that we had to pick ourselves up and give Connor the best life possible, no matter what the cost. We began researching cerebral palsy and ways to help Connor. In our research we discovered Dr. Park at St. Louis Children’s Hospital and a procedure called Selective Dorsal Rhizotomy (SDR). Dr. Park is the pioneer of this procedure and is one of the world’s leading neurosurgeons specializing in spastic cerebral palsy. The doctor cuts the nerves in the spinal cord that cause the spasticity and although it’s not a cure, SDR is the only permanent treatment for spastic cerebral palsy.
Due to the spasticity, Connor is unable to stand or walk independently. He’s able to furniture cruise, crawl and in environments that allow, he uses a reverse kaye walker. The spasticity is to blame for Connor developing foot deformities as well as hip subluxation. Spasticity is painful and therefore Connor is on daily medication that reduces the muscle tightness.
Connor was recently accepted by Dr. Park for this life changing surgery. He believes after surgery and intensive therapy, Connor could become an independent walker. He also feels that Connor is at the perfect age to undergo this surgery and feels that doing this at a young age will minimize, if not eliminate, any future orthopedic surgeries.
This surgery will take place on March 3, 2015 in St. Louis, Missouri. We are responsible for 20% of the surgery/hospital cost in addition to travel and hotel accommodations. We will be in St. Louis for 8 days and feel that it is in Connor’s best interest to fly, especially after discharge. All money raised through this site will be used for medical and travel expenses associated with this procedure.
Please consider donating to this life changing surgery for Connor.
We know God is not finished with Connor and we are trusting in Him!
Organizer
Linda Ferguson
Organizer
Cleveland, OH
